Author Topic: NF2 Headcount please  (Read 9463 times)

ppearl214

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NF2 Headcount please
« on: January 02, 2007, 08:50:18 am »
Hi all,

Ok, willing to step up to the plate with forum admin to have a separate section for NF2 to be noted here....so, please post here if you are NF2 and would note if a separate NF2 section/dicussion category would be of interest to you.

Thanks.
Phyl

(p.s.  I have a dear friend who is located in Metro Boston who is in the process of inventing hearing devices specifically targeted for NF2. He's been doing some marvelous research on NF2, cochlear implants, etc and is now working with Mass Eye and Ear on his new device. Trying to get him to attend the symposium in Philly in July..... will keep you updated on any info he can share. He truly is looking out for us)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

marie

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Re: NF2 Headcount please
« Reply #1 on: January 02, 2007, 04:37:05 pm »
I've been told that I probably have NF2 because I have an AN on the second side.    I would be interested in a separate NF2 section/discussion.
surgeries : back of head 1967,1987
               translab 1991
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               7/12  1968
               temporalis transplant  1969

tony

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Re: NF2 Headcount please
« Reply #2 on: January 03, 2007, 02:11:44 am »
Yes I think an NF2 section makes sense
we do get NF2 newbies who are looking for answers
- but I wouldnt want us excluded from the main group etc
best regards
tony

ixta

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Re: NF2 Headcount please
« Reply #3 on: January 03, 2007, 03:45:44 pm »
yes I like having the NF2ers float around here, they offer diversity within the boards, and one of them really helped me in educating what NF2 is compared to just a good o'l AN on my cochlear nerve  ;)
there are so many deeper health issues with NF2 though that I think it warrants its own forum area.
I wouldve researched and asked questions within a forum designed for NF2, but instead I had to post them under a thread I already had running under microsurgical area.

Within its own area---questions and answers can be more targeted and organized instead of being spread out all over the boards.
This would make it easier for New people looking for NF2 info by not having to do random searches.

I do not have NF2.
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
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ppearl214

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Re: NF2 Headcount please
« Reply #4 on: January 03, 2007, 04:20:16 pm »
our voices are being heard.. thanks folks! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

hgtvqueen

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Re: NF2 Headcount please
« Reply #5 on: January 03, 2007, 05:59:04 pm »
 ;D  A place for the NF2 would be great!

chrissmom

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Re: NF2 Headcount please
« Reply #6 on: January 03, 2007, 06:06:47 pm »
Go for it, Phyl.   I think it would be a great idea.  Congratulations on your Christmas 2006 present.

Jeff

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Re: NF2 Headcount please
« Reply #7 on: January 03, 2007, 09:39:19 pm »
I am in agreement with Tony's statement. I would love to see a NF2 section, but would also like to continue participating in other sections as well.
Jeff :)
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multiple AN surgeries
last surgery June 08

ppearl214

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Re: NF2 Headcount please
« Reply #8 on: January 03, 2007, 10:06:48 pm »
Hi all,

thanks SO much for your feedback! :)

FYI.. it would not be segregating NF2 patients from the rest, but a forum discussion area here where info specifically dedicated to NF2 patients can be shared (like the section here for microsurgery, the section for radio-surgery, etc), nothing more... otherwise, still business as usual.

I hope that clarifies.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Timjk

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Re: NF2 Headcount please
« Reply #9 on: January 04, 2007, 09:46:51 am »
I am all for an NF2 section. Along with the AN's on both sides they first found 3 large tumors on my lower spine,which a key finding for NF2. Also from my brain MRI they found I have Chiari 1 malformation.. For any of you not familiar with that condition,from what I can gather is there is a gap in my skull where the spinal cord enters the brain which has caused part of my cerebellum to "leak" out thru the gap,touching my spinal cord. I also have lesions on my spinal cord.
     I like to think of it as "just like a day at the beach,without the sun,sand and sea gulls"...
       Any first hand information on NF2 and Chiari would be VERY helpful...
Thanks again everyone for welcoming me into the group and for being so caring.

                    Tim Kimball
Surgery Feb.7th at Moffitt,Tampa. Removed right side AN 3.3 CM plus Chiari Malformation decompression.Second surgery Feb.23rd Ventricle Periphirial Shunt to correct CSF leak.. NO HEARING LOSS.. NO HEADACHES... GOD IS GOOD !!!

ppearl214

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Re: NF2 Headcount please
« Reply #10 on: January 04, 2007, 09:57:07 am »
Thanks Tim for noting about NF2 section here... I am so sorry you are enduring what you are but we're all here for you....

...and as a side note, I am Chiari I as well (as well as Raydean's daughter).

Phyl



I am all for an NF2 section. Along with the AN's on both sides they first found 3 large tumors on my lower spine,which a key finding for NF2. Also from my brain MRI they found I have Chiari 1 malformation.. For any of you not familiar with that condition,from what I can gather is there is a gap in my skull where the spinal cord enters the brain which has caused part of my cerebellum to "leak" out thru the gap,touching my spinal cord. I also have lesions on my spinal cord.
     I like to think of it as "just like a day at the beach,without the sun,sand and sea gulls"...
       Any first hand information on NF2 and Chiari would be VERY helpful...
Thanks again everyone for welcoming me into the group and for being so caring.

                    Tim Kimball
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Dealy

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Re: NF2 Headcount please
« Reply #11 on: January 04, 2007, 10:00:03 am »
I am normaly by nature a leader-not a follower so I was waiting from input from other NF2's before I posted. A seperate forum would be great but not to be excluded from other input etc. Ron

ppearl214

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Re: NF2 Headcount please
« Reply #12 on: January 04, 2007, 10:02:51 am »
Thanks Ron!  It would just be a forum section to share NF2 experiences and such, but definately not an exclusion to anything else....   You're still stuck with us :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ixta

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Re: NF2 Headcount please
« Reply #13 on: January 05, 2007, 07:12:23 pm »
ya NF2s! We are here to support you -the unilateral AN-ers.

Perhaps we can form socccer teams and play eachother to see who falls down first.
 :D
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
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